In 1974, my mother was diagnosed with systemic lupus erythematous (SLE). Lupus is an autoimmune disease characterized by acute and chronic inflammation of various tissues of the body. Autoimmune diseases are illnesses that occur when the body's tissues are attacked by its own immune system. (medicinenet.com) The most common forms of lupus are discoid and SLE both forms occur more often in women than men; with the largest demographic of lupus patients being African-American women.
The moment my mom was diagnosed it turned our lives upside down. When my mother received her diagnosis; I was only five years old, my brother was 18 months and my sister was a newborn. A few months later we were sent to live with relatives because my mother was hospitalized for several months and unable to care for us; I believe we were sent to live with my mother's sister in Maryland, this was one of many times that we would have to leave our home due to my mom's illness. We were often on our own or split up amongst relatives whenever my mom would have a flare. I had to learn to be responsible and care for others at a very young age; being the oldest of the three children, responsibility was not much of an option.
You see, even when my mom was home, she was often not able to care for herself or us; due to affects of the disease and more often because of the side-effects from her prescribed medications. Lupus was not well known and there were not any drugs specifically to treat lupus; patients were left with drugs that had horrible side-effects, drugs such as prednisone (a steroid), plaquenil and sometimes even chemotherapy. The plaquenil caused severe nightmares, my mother would cry out nightly in her sleep. Imagine being a young child being woken most nights by this, and feeling like it was your responsibility to make sure everything was ok. The prednisone caused weight gain, extreme mood swings and finally heart damage. My mother passed away from a massive heart attack six months after her 50th birthday.
I do not regret the difficulty I had growing up; in fact I don't see how I could be the person I am today without the lessons of strength, perseverance and faith that I had to learn at age too young to do most things. :-) However, I would not wish that lack of a childhood on anyone. Lupus can slowly destroy a person's body and leave unforgettable emotional scars on their loved ones. I believe the journey I experienced as a child is so I can help others today; my hope is that no other lupus patient has to endure what my mother endured for 27 years of her life and no other little girl (or boy) has to carry the burdens of an adult as I did.
There is good news today, as I stated before the only options for treatment were prednisone and drugs used to treat other diseases, but today after more than 50 years the FDA approved a drug specifically to treat lupus, Benlysta. This is definitely a step in the right direction for all lupus patients, and all the people who love and support them. While this is fabulous news, we have more to do. The Lupus Foundation of America (LFA) is at the forefront of research and services for lupus patients and their families, and there are walks called "Walk for Lupus Now" all over the country helping fund the LFA's efforts.
I walk for lupus in memory of my mother Gloria (Glo) Brown and my family members who are still battling lupus today. Join me by "Walking for Lupus Now", donating or by joining my fundraising team; it is easy, just click on the link below and look for Team "Glo". https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=470305&supId=324074019
Thank you for your support,
Toni
Reference Materials:
http://www.medicinenet.com/systemic_lupus/article.htm
http://www.lupuspnw.org
http://lupus.org
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Location:Seattle Area
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